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Illness perceptions, risk perception and worry in SDH mutation carriers

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Abstract

Succinate dehydrogenase (SDH) mutation carriers are predisposed for developing paragangliomas. This study aimed to explore illness perceptions, risk perception and disease-related worry in these individuals. All consecutive SDHB and SDHD mutation carriers followed at the Department of Endocrinology of the Leiden University Medical Center (LUMC), a tertiary referral center, were eligible for inclusion. Illness perceptions were assessed using the validated Illness Perception Questionnaire-Revised and compared to reference populations. Risk perception and worry were measured by two items each and associations with illness perceptions explored. Twenty SDHB and 118 SDHD mutation carriers responded. Compared with various reference groups, SDH mutation carriers perceived less controllability of their condition. SDHB mutation carriers considered their condition to be less chronic in nature (p = 0.005) and perceived more personal (p = 0.018) and treatment control (p = 0.001) than SDHD mutation carriers. Mutation carriers with manifest disease reported more negative illness perceptions and a higher risk perception of developing subsequent tumors than asymptomatic mutation carriers. Illness perceptions, risk perception and disease-related worry were strongly correlated. Risk perception and disease-related worry may be assessed through illness perceptions. The development of interventions targeting illness perceptions may provide tools for genetic counseling.

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References

  1. Astuti D, Latif F, Dallol A, Dahia PL, Douglas F, George E, Skoldberg F, Husebye ES, Eng C, Maher ER (2001) Gene mutations in the succinate dehydrogenase subunit SDHB cause susceptibility to familial pheochromocytoma and to familial paraganglioma. Am J Hum Genet 69:49–54

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  2. Baysal BE, Ferrell RE, Willett-Brozick JE, Lawrence EC, Myssiorek D, Bosch A, van der Mey A, Taschner PE, Rubinstein WS, Myers EN, Richard CW III, Cornelisse CJ, Devilee P, Devlin B (2000) Mutations in SDHD, a mitochondrial complex II gene, in hereditary paraganglioma. Science 287:848–851

    Article  CAS  PubMed  Google Scholar 

  3. Benn DE, Gimenez-Roqueplo AP, Reilly JR, Bertherat J, Burgess J, Byth K, Croxson M, Dahia PL, Elston M, Gimm O, Henley D, Herman P, Murday V, Niccoli-Sire P, Pasieka JL, Rohmer V, Tucker K, Jeunemaitre X, Marsh DJ, Plouin PF, Robinson BG (2006) Clinical presentation and penetrance of pheochromocytoma/paraganglioma syndromes. J Clin Endocrinol Metab 91:827–836

    Article  CAS  PubMed  Google Scholar 

  4. Gimenez-Roqueplo AP, Favier J, Rustin P, Rieubland C, Crespin M, Nau V, Khau-van Kien P, Corvol P, Plouin PF, Jeunemaitre X (2003) Mutations in the SDHB gene are associated with extra-adrenal and/or malignant phaeochromocytomas. Cancer Res 63:5615–5620

    CAS  PubMed  Google Scholar 

  5. Neumann HP, Pawlu C, Peczkowska M, Bausch B, McWhinney SR, Muresan M, Buchta M, Franke G, Klisch J, Bley TA, Hoegerle S, Boedeker CC, Opocher G, Schipper J, Januszewicz A, Eng C (2004) Distinct clinical features of paraganglioma syndromes associated with SDHB and SDHD gene mutations. JAMA 292:943–951

    Article  CAS  PubMed  Google Scholar 

  6. Timmers HJ, Kozupa A, Eisenhofer G, Raygada M, Adams KT, Solis D, Lenders JW, Pacak K (2007) Clinical presentations, biochemical phenotypes, and genotype-phenotype correlations in patients with succinate dehydrogenase subunit B-associated pheochromocytomas and paragangliomas. J Clin Endocrinol Metab 92:779–786

    Article  CAS  PubMed  Google Scholar 

  7. Hes FJ, Weiss MM, Woortman SA, de Miranda NF, van Bunderen PA, Bonsing BA, Stokkel MP, Morreau H, Romijn JA, Jansen JC, Vriends AH, Bayley JP, Corssmit EP (2010) Low penetrance of a SDHB mutation in a large Dutch paraganglioma family. BMC Med Genet 11:92

    Article  PubMed Central  PubMed  Google Scholar 

  8. Cameron LD, Reeve J (2006) Risk perceptions, worry, and attitudes about genetic testing for breast cancer susceptibility. Psychol Health 21:211–230

    Article  PubMed  Google Scholar 

  9. McCaul KD, Schroeder DM, Reid PA (1996) Breast cancer worry and screening: some prospective data. Health Psychol 15:430–433

    Article  CAS  PubMed  Google Scholar 

  10. Mullens AB, McCaul KD, Erickson SC, Sandgren AK (2004) Coping after cancer: risk perceptions, worry, and health behaviors among colorectal cancer survivors. Psycho-oncology 13:367–376

    Article  PubMed  Google Scholar 

  11. Cameron LD, Muller C (2009) Psychosocial aspects of genetic testing. Curr Opin Psychiatry 22:218–223

    Article  PubMed  Google Scholar 

  12. Cameron LD (1997) Screening for cancer: illness perceptions and illness worry. In: Petrie KJ, Weinman JA (eds) Perceptions of health and illness: current research and applications. Harwood Academic, Amsterdam, pp 291–322

    Google Scholar 

  13. Kaptein AA, van Korlaar IM, Cameron LD, Vossen CY, van der Meer FJ, Rosendaal FR (2007) Using the common-sense model to predict risk perception and disease-related worry in individuals at increased risk for venous thrombosis. Health Psychol 26:807–812

    Article  PubMed  Google Scholar 

  14. Leventhal H, Brissette I, Leventhal EA (2003) The commonsense model of self-regulation of health and illness. In: Cameron LD, Leventhal H (eds) The self-regulation of health and illness behaviour. Routledge, London, pp 42–65

    Google Scholar 

  15. Scharloo M, Baatenburg de Jong RJ, Langeveld TP, van Velzen-Verkaik E, Doorn-op den Akker MM, Kaptein AA (2005) Quality of life and illness perceptions in patients with recently diagnosed head and neck cancer. Head Neck 27:857–863

    Article  PubMed  Google Scholar 

  16. Tiemensma J, Kaptein AA, Pereira AM, Smit JW, Romijn JA, Biermasz NR (2011) Affected illness perceptions and the association with impaired quality of life in patients with long-term remission of acromegaly. J Clin Endocrinol Metab 96:3550–3558

    Article  CAS  PubMed  Google Scholar 

  17. Tiemensma J, Kaptein AA, Pereira AM, Smit JW, Romijn JA, Biermasz NR (2011) Negative illness perceptions are associated with impaired quality of life in patients after long-term remission of Cushing’s syndrome. Eur J Endocrinol 165:527–535

    Article  CAS  PubMed  Google Scholar 

  18. Kaptein AA, Klok T, Moss-Morris R, Brand PL (2010) Illness perceptions: impact on self-management and control in asthma. Curr Opin Allergy Clin Immunol 10:194–199

    Article  CAS  PubMed  Google Scholar 

  19. Broadbent E, Ellis CJ, Thomas J, Gamble G, Petrie KJ (2009) Further development of an illness perception intervention for myocardial infarction patients: a randomized controlled trial. J Psychosom Res 67:17–23

    Article  PubMed  Google Scholar 

  20. Petrie KJ, Cameron LD, Ellis CJ, Buick D, Weinman J (2002) Changing illness perceptions after myocardial infarction: an early intervention randomized controlled trial. Psychosom Med 64:580–586

    PubMed  Google Scholar 

  21. Hensen EF, Siemers MD, Jansen JC, Corssmit EP, Romijn JA, Tops CM, van der Mey AG, Devilee P, Cornelisse CJ, Bayley JP, Vriends AH (2011) Mutations in SDHD are the major determinants of the clinical characteristics of Dutch head and neck paraganglioma patients. Clin Endocrinol (Oxf) 75:650–655

    Article  CAS  Google Scholar 

  22. Moss-Morris R, Weinman J, Petrie K, Horne R, Cameron L, Buick D (2002) The revised illness perception questionnaire (IPQ-R). Psychol Health 17:1–16

    Article  Google Scholar 

  23. Vogel JJ, Godefroy WP, van der Mey AG, le Cessie S, Kaptein AA (2008) Illness perceptions, coping, and quality of life in vestibular schwannoma patients at diagnosis. Otol Neurotol 29:839–845

    Article  PubMed  Google Scholar 

  24. Cameron LD, Diefenbach MA (2001) Responses to information about psychosocial consequences of genetic testing for breast cancer susceptibility: influences of cancer worry and risk perceptions. J Health Psychol 6:47–59

    Article  CAS  PubMed  Google Scholar 

  25. Jansen JC, van den Berg R, Kuiper A, van der Mey AG, Zwinderman AH, Cornelisse CJ (2000) Estimation of growth rate in patients with head and neck paragangliomas influences the treatment proposal. Cancer 88:2811–2816

    Article  CAS  PubMed  Google Scholar 

  26. Sajid MS, Hamilton G, Baker DM (2007) A multicenter review of carotid body tumour management. Eur J Vasc Endovasc Surg 34:127–130

    Article  CAS  PubMed  Google Scholar 

  27. Godefroy WP, Kaptein AA, Vogel JJ, van der Mey AG (2009) Conservative treatment of vestibular schwannoma: a follow-up study on clinical and quality-of-life outcome. Otol Neurotol 30:968–974

    Article  PubMed  Google Scholar 

  28. Hoskins LM, Roy KM, Greene MH (2012) Toward a new understanding of risk perception among young female BRCA1/2 “previvors”. Fam Syst Health 30:32–46

    Article  PubMed  Google Scholar 

  29. Caruso A, Vigna C, Marozzo B, Sega FM, Sperduti I, Cogentti F, Saverese A (2009) Subjective versus objective risk in genetic counseling for hereditary breast and/or ovarian cancers. J Exp Clin Cancer Res 28:157

    Article  PubMed  Google Scholar 

  30. Kelly KM, Senter L, Leventhal H, Ozakinci G, Porter K (2008) Subjective and objective risk of ovarian cancer in Ashkenazi Jewish women testing for BRCA1/2 mutations. Patient Educ Couns 70:135–142

    Article  PubMed  Google Scholar 

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The authors declare that they have no conflict of interest.

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Authors and Affiliations

  1. Department of Endocrinology and Metabolic Diseases, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, The Netherlands

    L. T. van Hulsteijn, A. Louisse, N. R. Biermasz, J. W. A. Smit & E. P. M. Corssmit

  2. Department of Medical Psychology, Leiden University Medical Center, Leiden, The Netherlands

    A. A. Kaptein

  3. Department of Internal Medicine, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands

    J. W. A. Smit

Authors
  1. L. T. van Hulsteijn
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  2. A. A. Kaptein
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  3. A. Louisse
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  4. N. R. Biermasz
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  5. J. W. A. Smit
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  6. E. P. M. Corssmit
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Correspondence to L. T. van Hulsteijn.

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van Hulsteijn, L.T., Kaptein, A.A., Louisse, A. et al. Illness perceptions, risk perception and worry in SDH mutation carriers. Familial Cancer 13, 83–91 (2014). https://doi.org/10.1007/s10689-013-9680-5

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  • DOI: https://doi.org/10.1007/s10689-013-9680-5

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